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Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Debbra Williams, Alumna Mentor | @debbraw | Sep 4, 2018
In reply to @dianajane "@IndianaScott . Isolating very true! That is how we are at this point. I cannot understand..." + (show)
@dianajane

@IndianaScott . Isolating very true! That is how we are at this point. I cannot understand when my husband tries to speak. Frustrating for him as well. No help ffrom physicians, etc; just patience and praying to be able to figure it out. Just found out that Primary Progressive Aphasia is a rare disease when not caused by stroke. At my wits end. So depressed, getting therapy....and praying for strength to get through each day. Thanks for your thoughts.

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@dianajane - it must be heartbreaking not to be able to understand his words. My husband struggles with words, but he usually gets them out in one form or another. Can your husband write his thoughts? Curious whether you and your husband have been through the HABIT program at Mayo ? It's specifically for people with Mild Cognitive Impairment and their partners. It was a godsend to us. My heart is going out to both of you.

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1 reply
dianajane | @dianajane | Sep 4, 2018
In reply to @debbraw "@dianajane - it must be heartbreaking not to be able to understand his words. My husband..." + (show)
@debbraw

@dianajane - it must be heartbreaking not to be able to understand his words. My husband struggles with words, but he usually gets them out in one form or another. Can your husband write his thoughts? Curious whether you and your husband have been through the HABIT program at Mayo ? It's specifically for people with Mild Cognitive Impairment and their partners. It was a godsend to us. My heart is going out to both of you.

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@debbraw

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dianajane | @dianajane | Sep 4, 2018
In reply to @dianajane "@debbraw" + (show)

@debbraw No he cannot write legible. not sequencing well. ?Mayo program? What is it.

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1 reply
Debbra Williams, Alumna Mentor | @debbraw | Sep 4, 2018
In reply to @dianajane "@debbraw No he cannot write legible. not sequencing well. ?Mayo program? What is it." + (show)
@dianajane

@debbraw No he cannot write legible. not sequencing well. ?Mayo program? What is it.

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@dianajane - the HABIT program is a Mayo program for people who have been diagnosed with Mild Cognitive Impairment and their spouses. Not sure where you are located, but they run programs in Jacksonville, FL, AZ and MN. Habit is an acronym that stands for Healthy Actions to Build Independence & Thinking. Here's a little clip about it. Definitely worth checking into. https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/multimedia/vid-20088028
Meantime, I'm glad you are here in the Connect Forum. Let me know what you think of the Habit video. OK?

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dianajane | @dianajane | Sep 6, 2018
In reply to @dianajane "@debbraw what a great idea! Calling 2 friends. I shall try it. Althought husband has aphasia,..." + (show)
@dianajane

@debbraw what a great idea! Calling 2 friends. I shall try it. Althought husband has aphasia, can't talk well. We shal see.

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@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

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Debbra Williams, Alumna Mentor | @debbraw | Sep 7, 2018
In reply to @dianajane "@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate..." + (show)
@dianajane

@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

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Hi @dianejane, I'm not sure what criteria they use for HABIT, but I do think it might be worth checking with Mayo to see about eligibility or what other programs may be available. It may help you feel less like you are struggling alone. Like we were talking about earlier, the feelings of isolation can be overwhelming. I'm hoping all goes well with your communication issues and you stay on Connect!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2018
In reply to @IndianaScott "Hi @bfbflattenor Please let your granddaughter know I think her new word is wonderful! I’m also..." + (show)
@IndianaScott

Hi @bfbflattenor Please let your granddaughter know I think her new word is wonderful! I’m also happy to hear you feel at home here! I am sorry to hear you’ve been unable to find anyone to talk to with a similar condition.

Can hou tell me what B-PLL stands for?

Strength, courage, and peace

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@IndianaScott Here is the discussion on B-cell prolymphocytic leukemia (B-PLL) that @bflattenor started in the Blood Cancers & Disorders group on Connect
https://connect.mayoclinic.org/discussion/b-pll/

Bflattenor, I edited the title of your discussion to included the full spelling of B-PLL. That may help more people find it.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2018
In reply to @cathyb "Hi minina.. I am new here and not sure you will get this but my husband..." + (show)
@cathyb

Hi minina.. I am new here and not sure you will get this but my husband was diagnosed with behavioral variant Frontal temporal dementia in 2013 and passed away in 2017. He was 63. I went through SO much partly because he was so young. I am writing this because you can make it through this awful decease. I mananaged to take care of myself and him as well caring for him at home until the last few months.

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Welcome @cathyb. I'm so pleased that you joined the discussion to help others. I think you might also enjoy reading and responding to some special discussions that Scott wrote. For example:
- May Thoughts from a Caregiver... https://connect.mayoclinic.org/discussion/may-thoughts-from-a-caregiver/
- Love and Caregiving... https://connect.mayoclinic.org/discussion/love-and-caregiving/
- Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2018
In reply to @dianajane "@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate..." + (show)
@dianajane

@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

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@dianajane I think you would enjoy following the Page on Connect called:
- Living with Mild Cognitive Impairment (MCI) https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

The Directors and guest bloggers publish a weekly blog and there's also more information about the HABIT program at Mayo Clinic, etc.

FYI: The blog posts on the MCI post are likely of high interest to everyone in the discussion group. They're really good.

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mongerj | @mongerj | Sep 25, 2018
In reply to @lindabf "I really get what that's like! My husband seems to me to be displaying some very..." + (show)
@lindabf

I really get what that's like! My husband seems to me to be displaying some very early symptoms of cognitive decline. He's 74 and otherwise very healthy. For awhile I thought I'd just gotten very boring and bad at communication since we could discuss something one day and the next, he didn't even remember we'd discussed it. Then I had one of those stomach-sinking "Aha's" - that's a dementia symptom. So far he can still drive, although on long trips, we take detours when he stops listening to the GPS because it confuses him. So far, no trouble getting around by himself in town, even if it takes a bit longer. He also still takes care of routine maintenance around the house. But odd things like suddenly he is incredibly frustrated by the remote control for the TV -- and it's the same frustration every day -- apparently no learning is being retained. We recently joined some friends for a simple domino game and he just couldn't get it -- the rules were overwhelming and the patterns on the dominoes confusing. He had to stop and count them each time, despite the color-coding. This is a former executive with an MBA. He still maintains he is fine and it's just normal senior moment stuff. He gave in and promised me he would ask his doctor about some testing, but I'm pretty sure that's one of those conversations he won't remember having. And despite the fact that he doesn't want me to, I plan to call his doctor and at least share my observations and concerns. When we are with friends or family, the main thing we notice is that his contributions to the conversation are not of the same quality we have experienced in the past. He's still enjoyable to be around for the most part (except when he is having one of his episodes of being aggressively frustrated by things he used to understand but now has trouble figuring out). I'm so glad we were able to get lots of wonderful traveling in before we became caretakers for Mom 7 years ago. Our hope was, after her eventual passing, we would enjoy the rest of our retirement together traveling and volunteering and such. It's discouraging to consider the possibility that for me it will just be an extended gig of caregiving instead. But as I said, we had a good run and a good life and some great trips. No use fighting this hateful disease--but I am sure looking forward to the kind of progress with dementia treatment that we've seen with cancer in the past few years! Glad there's a place to share about it with people who don't pat your hand or roll their eyes, but actually share frustrations, ideas, and tips!

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I am in a similar situation with similar decline and my heart goes out to you. I feel like I am on a roller coaster ride going from acceptance back to denial, from strength to a complete loss of trust in my ability to help him, from happiness because of what we still have to deep sadness for what we have lost. There are protocols that promise complete reversal if you have lots of money and live an impossible lifestyle. Mostly I feel blessed to have been married to this man for 45 years now with all the ups and downs and will do my best, with lots of help, to make these years have meaning.

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